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Now Its Raining Cats and Depression

A few months ago I wrote about how it felt like it was raining cats and bowel problems. It felt like everyone I knew was having some issues with their IBD/jpouch/Ostomy. Like for whatever reason, the IBD gods were smiting us all. It sucked.

Well now its raining cats and depression. I have countless friends that are going through deep and severe bouts of depression right now. Myself included. I’ve found that when I get depressed, like this, there are very few things that I want to do. Most of them involve self medicating and sleeping. Wallowing on my couch has been a favorite activity for the last month. And then talking to my other friends about why they are depressed and if/how we can help each other.

What I’ve learned about having depressed friends is that it is a blessing and a curse. Its just like having other chronically ill friends. Sometimes you can relate to each other so well, that its incredibly comforting know that at least someone out there kind of understands why you haven’t showered in 5 days and are ok living on a box of cheeze its for an extended period of time.

But other times, you tend to bring each other down and its a slippery slope. My friends and I try to check in on each other daily and if I’m having a good day and they are having a bad day, I’ve noticed my feelings can change. And the same vice versa. Sometimes I have to tell certain friends that I can’t be their support network right now because I am not strong enough in my own life. Being depressed almost always revolves around some level of being selfish. Maybe you’re ignoring your friends calls. Maybe you cancel plans. Maybe you’re not a listening ear when someone else needs it. I think all of that is fine as long as you just give people a heads up on why you’re doing it. I have told people lately, that I’m have a really difficult time in my life right now, so I find myself retracting and isolating, so please don’t take it personally. And that’s all I have to say.

Some days are ok. Some days I wake up already hyper focusing on negative issues and things that I can’t change. Those days I take a lot of Xanax and when I get home I have a glass of wine. Is this the “right” way to deal with it? Nope. But right now sometimes I have to just shut my brain off, and that is how I choose to do it. Depression is a weird thing that is unique for everyone. All that I really know is that its very difficult to crawl out from it and that a lot of people I care about are down in this hole with me.  But I am doing what I can to crawl out, step by step, day by day. I take my anti depressants. I take my Xanax. I go to therapy. I talk to my friends and I try to set small daily goals so I can feel like I accomplished something. Sometimes that goal is just getting the mail but at least I did it.

Just know that many of us who are chronically ill deal with depression in varying degrees. Mild to severe. Frequent to periodically. I know that it does get better, even though it feels awful right now. It does. It will. In time.

 

 

 

 

 

Dehydration – The obvious and no so obvious

I am currently starting a new medication for MS called Tecfidera. Much to my chagrin, the first month of this medication has patient reports of mega GI issues. So “mega” that many patients with normal colons stop the medication. Jackie, why are you such a dumb dumb and taking this med? Well, in terms of MS medications the options are limited because I am not “compliant” with taking injections. Which basically means no matter how many times I start an injection therapy, I forget, don’t want to, or whatever other excuse there is for not taking it. Last year I tried Gilenya, which was the first oral medication released for MS, and well…I can’t take that one either. So I’m here, trying Tecfidera and all was well for the first week or so but now, its just dehydration all over. My poop is 100% liquid, and I haven’t been eating much because it makes me feel super nauseous. I even had an accident last night because the stool was so loose. This literally NEVER happens to me. So this brings me to my favorite IBD delimma, to ER or not to ER. Before you give me the lecture, just know that I will probably wait until the last minute to go because its what I do.

BUT the whole point of this thing is symptoms of dehydration because so many are obvious and a few are not so obvious. So when I’m dehydrated, here is what I feel.

  • Extreme fatigue (I’m sleeping like 11-12 hrs a night and its not helping)
  • Nausea
  • Dry and itchy eyes
  • Sore throat or a “sick voice”
  • a heavy head, it feels difficult to keep it held up
  • It feels like I poop liquid more frequently, almost as if my body is tying to deplete itself
  • Contrary to most people, I don’t feel thirst. I actually do not want to drink at all
  • Dry skin on my face and hands
  • Constant headaches all over my head, unlike a cluster headache
  • light headedness
  • difficulty with breathing
  • everything is slow, my walking, my talking, my thinking, everything
  • fever or hot flashes
  • I also feel very cold and get chills often, regardless of the hot flashes
  • heavy heart beat. When I lay still I can feel my heart moving my whole torso when it beats.
  • Sore back between my shoulder blades

So what do I do about it? First I get really frustrated and angry. Then I load up on Smart Water (because I truly believe it works). Then I sleep a whole lot. I’ve been pretty depressed lately, so I’m doing my best not to cry. There are these hydration packets that I think I’m going to try this time. Frankly there is a huge part of me that wants to just give up on the home hydration because its exhausting and very frustrating. But someone once told me the importance of taking control of your health even when its going down hill. I recently learned that the way you do or don’t take care of yourself can frame how someone views you. I always make jokes about my future, and how pitiful it maybe, but I learned that not everyone thinks those jokes are funny.

Frankly, I’m tired of taking care of myself, but you know what? You do what you have to do and hopefully this time won’t involve the ER.

More Adventures in Dating – Guest Post

The Love Birds
The Love Birds

I met my boyfriend shortly before his first surgery. His illness was pretty epic. He had been sick for maybe ten years with UC when we met. He moved to the UK to change careers and started training as a teacher at the school where I worked. It was not an easy school to work at, even for someone experienced. I’d hate to think how hard it must’ve been on immunosuppressants and steroids and in constant pain. But he managed to do it all and still remain cheerful. The staff and the students all loved him. No one knew how sick he was. Not even his best friend I think. I suppose he had learned to keep it from a lot of people by then, but he was really unwell.

A few months later he was hospitalized with shingles, as the drugs had weakened his immune system. We were friends by then and he tells me now that he’d already fallen for me, but decided he was in no state to contemplate women or relationships due to his health. I knew he had colitis, but I knew bugger all about the disease apart from that it affected the bowel. A few months later he had his bowel removed as a matter of urgency and had complications from his surgery. We kept in touch through our mutual friends and he returned to work after the summer.

We became great friends when he returned to work. Weirdly, his illness was partially responsible for us getting together. UC had nearly killed him, but it made him so grateful and positive about being alive after his first operation, he was so awesome to be around. His love of life was contagious and I loved hanging out with him. I’d never known someone with such a unique perspective. He used to tell me how great it felt to feel the wind and rain on his face after months stuck in hospital. Anyone who could be positive about the English weather had to be something special.

I knew he had an ostomy, but it didn’t bother me. He was so much healthier because of it and I was just so grateful he was around, bag or no. I let him tell me about his illness and surgeries when he was ready. We took a while to get together. The only reason I hesitated was because we had become so close as friends and we had a close knit group of common friends, that we both sensed it had to be all or nothing if we got together.

Since then we’ve not let it hold us back: I nicknamed his ostomy Oswald and we saw the funny side when he made noises, we saw the bright side to Oswald when we went to psy trance festivals in the middle of nowhere and managed to convince the medical team to let us use the medical tent loos (even though we spoke zero Hungarian), we realised his limitations when moved in together a matter of weeks after his second operation (and subsequent infections). Tip: Do not allow your significant other to try to move house post op, coming off tramadol and morphine.

The most difficult part of being with him was seeing him get down about having Oswald. I was so into this guy, I couldn’t have cared less if he had an ostomy or not. It didn’t scare me off but it really upset me that it made him uncomfortable, self-conscious or less confident at times. He avoided being completely naked around me at first which I understood, but his bag never put me off. It had saved his life. I fucking loved that thing.

A letter written to her partners ostomy
A letter written to her partners ostomy, click to see larger

There was one time, not long after we got together, when we were staying at our mates’ house. We’d had a lazy morning and were in the early stages of our relationship where you shag each other’s brains out. Then… the worst thing that could’ve happened happened. A leak. A significant leak. In bed. Pretty much right after a really lovely moment. Looking back now, we both think it’s pretty fucking funny. Not only did it occur at THE MOST (well, almost the most) inopportune time, but also: we weren’t at home and our best mates knew what had just gone on. But, despite it being embarrassing at the time, it wasn’t as bad as it could’ve been. It kind of got the worst out of the way pretty swiftly and we were able to get on with our lives. So what if it happened again? I don’t think it did happen again after that actually, but it took the fear out of that situation.

Two and a half years on, Oswald is gone and my boyfriend has a fully functioning j pouch. I have always said to him that if something goes wrong down the line, I’d welcome Oswald back with open arms. That bag made our relationship rock solid from the start. We had to be open and honest with each other from the get go. I became my boyfriend’s emergency contact/next of kin for his surgeries fairly early in our relationship. It brought us together in lots of ways.

We will get married in a week’s time.


And here’s a note from her boyfriend:

This is a letter my girlfriend (now fiance) wrote to my ostomy (and associates) after I had a serious shit party in my car, (leak, I think it was in the car on my way to work) and was just a bit pissed off.

We named my ostomy ‘Oswald’ and in truth we thought of ‘him’ as a third person (I’m sure you would get that).

Our relationship with Oswald was a love/hate kind of thing. We loved him for helping me be alive (just a small thing really!) but we hated him for being an arsehole. To be honest, we loved him more than we hated him.

We got together after I had my ostomy. We had been good friends before, we got together. I was all sorts of nervous but we worked out. I know Patches has written you an email describing how it all went so I won’t double up here. I just want to say that I really think it’s definitely possible to to start a relationship, even with an ostomy (shock horror!). All you need is someone who understands and is loving. Bec has been the most amazing person. I will be forever indebted to her for the way she looked after me and treated me (even when I did shit the bed). Her sense of humour was infectious and only served to made me laugh. Constantly!

Yep there will be arseholes. There will always be arseholes out there, with or without an ostomy. I read somewhere before that an ostomy is like an arsehole filter. Keeps them arseholes away. So, I figure, if somebody is all weird and shit then they are just not for you (sometimes, they mightn’t be arseholes, just not educated or open minded enough).

More Adventures in Dating – Guest Post

RedGlassHeartIMI’ve been following Jackie’s blog for awhile now and after her recent post about dating with jpouch and the negative comments she received after it went live, I felt the need to step in and give my perspective on dating as a permanent ostomate.

From what I’ve seen and heard, many ostomates, male and female, are concerned about how others perceive them. We worry that our appliance can be detected under our clothes or that if people see our bags, say if we wear a swimsuit or something similar, then we’ll be labeled as “abnormal” or “gross.”  For those of us who are single and interested in dating, we have additional concerns: Will we be seen as unattractive? Will a prospective partner not want to have sex with us? Will dates be freaked out?

Speaking from my own experience, I have never once (that’s right, not a single time!) had a date or sexual partner react negatively to my ostomy. One guy knew I had one because of our mutual friend. When we became intimate, I asked him, “so you really don’t care that I have an ostomy?” and he responded, “why the hell would I care about that? You’re beautiful.” Another guy I met online and after a few dates I told him about my ostomy. His two questions? Would sex hurt my ostomy and did my vag still work. When telling another partner, he just held my hands and said “an ostomy isn’t who you are, it’s just a small part of you, and regardless, I want to know all of you.”

Maybe my experience is abnormal, I’m not sure. But I do know this: when I tell or talk to people about my ostomy, I come across with confidence. I don’t make a big deal out of it, mainly because I don’t see it as a big deal. Aside from the three people mentioned above, I’ve been on multiple dates with others whom I did not become sexually involved with, but who certainly tried their best to get in my pants – all the while knowing I have an ostomy.

I don’t know how other single ostomates tell dates or partners about their ostomy, but I like to keep my approach simple. Once I find an appropriate and casual segue into the conversation, I say something like this: “So I got really sick a few years back, have had some surgeries to make me better, and one of them saved my life. The result of that one is that I now have an ostomy. I don’t think it’s a big deal and neither should you, as it really doesn’t affect anything.” Most of the time my date won’t know what an ostomy is, so I tell them very briefly and will sometimes show it to them so that they can see what a small part of me it is. The typical response? “Is that it?” or “That’s all it is?”

I’m not trying to downplay the negative experiences of other ostomates in the dating world as I’ve heard stories of dates reacting poorly, but I do have to wonder how the topic is being talked about or explained and whether the ostomate is coming across as confident or insecure. Perhaps a few readers can chime in and detail their dating adventures instead of just attacking Jackie for not understanding the permanent ostomate’s experience since she has a j pouch? I’d be interested in understanding what other ostomates are going through….

My adventures in dating

So I’m dating. Well, I started dating. Let me rewind.

Dating is a HUGE topic in our community because there is a lot of fear around disclosure and acceptance. In the past I’ve written about dating and my opinions, but I have never actually dated since I was diagnosed with IBD. So all of my theories and advice were pure speculation, even though I still consider it solid advice.

So now I have legit experience in the dating-sphere, and I’d like to share it with you guys. I approached dating cautiously, after all the world is full of crazies. I haven’t actually dated…ever. I was in two very serious relationships for the last 13 years so not only is dating with IBD/jpouch scary, dating in general scared the literal shit out of me. I realize that I tend to talk about my butt to anyone and everyone who will listen, but I also realize that is not great first date conversation. Or at least that’s what I’ve read in forums and other blogs. Hell, I think that’s the advice that I gave in the past.

Here is what I realized…I can’t not talk about my butt. First dates, and even the predating period, it took me a matter of days, if not hours to spill the details on my defunct digestive system. I literally can not stop talking about my butt, and my blog and Girls With Guts. If this was the test, I failed with flying colors. Even if I wanted to hide my history,  if just for a few dates, I can’t. My name and face is plastered all of the internet with “butt disease” slapped right next to it. I have positioned myself in a place where my future beau can read details about how I poop, see my fat face pictures, and view graphic photos of my body when it was at its worst. This is my life, there is no hiding it, there is no going back. I get that is scary for potential suitors, but whelp, this is me.

But you know what…not one of the guys I was talking with cared. In fact, many of them talked with me about their own health ailments and it made me realize a few things about the world. First, that many of us are all giant health disasters, and also that people like and fall in love with the person, not their medical records. I’m sure there are people out there who might run screaming from me on a first date, but frankly, I never found that guy. Not once.

In fact, I found the opposite. I have found someone who cares about me because of what I’ve done with the hand I was dealt. Someone who understands and can relate. Someone who I think is really great, and who thinks that the sun shines out of my ass. Actually, I’m going to ask him to guest post so he can tell you himself what he thought when he met me, learned about my butt disease, and MS and why he didn’t run screaming.

So don’t let IBD scare you away from dating. There a million reasons why someone can like you, or not like you, and frankly IBD is probably not one of them.

Its raining cats and bowel problems

-kitten-offers-to-help-sad-friendSomething is off in the IBD universe right now and I don’t know why, but I don’t like it. Many of my close friends have been sent to the ER and had hospitals stays for blockages, fistulas and a lot of dehydration. So I’ll preface this with, srsly people. Take care of yourselves. We all need a reminder to take it easy, and to stay on top of our health, and I hope that you take my hospital fun and that of my friends as your own reminder.

So during this period of time I had an interesting situation arise. I would say 90% of my friends have IBD or related health issues. Usually when one of us goes down, be it for IBD issues or life issues, most of us are there to pick them back up. To offer support and to listen to how much life sucks at that moment. But what happens when all of your “pick me up people” are down for the count? How do you pick each other up?

Well I learned that you don’t. I found myself struggling between keeping my own head above water, and sincerely caring for my friends who problems were equally as complicated and sucky. Constantly torn between feeling like a shitty friend and wanting to just be selfish and sick and sad. I would fluctuate between being mad that they didn’t show enough interest or concern in my conditions but at the same time logically understanding why they didn’t and that I was not as supportive as I would have usually been.

So it became this big, mean circle. Where I got sick, and they got sick. I cared for their issues until I had to care about mine. Then I would have less of an interest in their issues, and they’d take less of an issue in mine. Then I would be angry that no one cared as much as I wanted them to. I haven’t confirmed this with any of my other friends, but I almost hope that they felt that same anger, and that I’m not a total asshole.

I am overly sensitive right now. Life is awesome, and I’m doing awesome things but my personal life is a bit of a drag. And it dragged down my health and my attitude all at the same time and I’m working hard to stay on top of it all. But recently I had this power struggle between how I aid my friends and how I aide myself. Quite frankly. I didn’t figure it out. I think I’m past this scenario at least for a while as it seems as though we’re all on the up and up, but damn. That sucked.

REMINDER: You're still sick.

I posted on the BPT facebook page earlier last week that I had pouchitis and that I was taking Flagyl for it.

Well…I got cocky.

I felt better within a few days and like a total dumb ass stopped taking the Flagyl after only about 5 days, only half of the recommended course. In the past this has worked for me, however I was not so lucky this time. It came back, and it came back angry. I noticed it again last Thursday but it really took a toll on Friday. I decided to start taking the Flagyl again but by that time the damage was already done. I laid on the couch most of Friday, Saturday and Sunday hoping to get less tired and feel better but it didn’t really help. So add in some person life drama, and drinking way too much coffee over the last few weeks and bam. Tuesday I checked myself into the ER for pouchitis and severe dehydration.

If you’re like me, you debate the ER for about 3 days before actually going. I called at least 4 friends to get their opinions. I even had my spiel for the doctors and nurses ready to go. It went something like, ” Hi, I have pouchitis and I’m dehydrated, just get me some saline and a CBC and I’ll be out of your way”.  But we all know what never really works. By the time I decided to actually go, I needed to go. I got there and after I got taken back, and put in the hallway (which is so fun as a patient , I literally could not keep my head up I was so drained. I had to take a huge breath before speaking because I was out of breath, and light headed. If I had waited much longer, I probably would have needed a ride, and I hate having other people drive me to the ER. I hate inconveniencing anyone else with my stupid body.

So I get there and after about an hour and a half, I finally got my IV and my fluids. Shockingly it only took one poke, but of course it wasn’t after the nurse telling me over and over how small and deep my veins were, which generally just gets me primed to ask for another nurse, but she got it, and only after like digging around for a few short seconds. To her credit, I’m not even bruised. Well done over chatty nurse, well done. So here is the best/worst part of the ER. They only half hear what you’re saying. They asked if I had pain or nausea, and I really didn’t so I said no, or it was minimal. So when the nurse came back with my goodies she brought, saline, IV Flagyl, IV Benadryl, IV Zofran, and IV Dilaudid. I was like, well, I’m never one to turn down the fun meds so shoot up, but srsly….doctors of the world, does anyone listen? I was actually pretty stoked for the Benadryl because it would help me sleep, Zofran and Diladud are like a weird fucked up bonus.

This ER story is much like many others. They gave me drugs I didn’t need, the Resident treated me like I was an idiot, and the nurses were amazing. The end. I decided to stay in observation for a few extra hours just to get the extra fluids because I thought I’d go to work the next day. But I didn’t. I woke up feeling better, but still just so damn tired. So I stayed home and wished I had stayed in observation for 24 hours so I could have gotten the fluids.

I’ve decided to turn my life into a drinking game to keep myself hydrated. Wake up – Drink. Take a shower – drink. Pet your dog – drink. Check facebook – drink. Its really a totally blast. Actually, its not, I hate trying to stay on top of my hydration. I suck at it, because I drink enough water for normal people, but not enough for the colonless. So I’m posted up at work today with some pedialyte and a water bottle.

So what are the lessons we’ve learned from my mistakes?

Take your damn Flagyl for the whole course.

 Also above all this reminded me that no matter how far I run, or how many programs Girls With Guts has, or how many degrees I get, or the fancy job that I have…I am still chronically ill. Not that I pretended not to be, or that I thought this was all past me, but I was doing so well for a really long time. And I got careless. The worst part about all of it, is realizing that this is my fault and it all could have been prevented. I realized a long time ago that I am not fragile, but it took this to remind me that I am not indestructible.

The Plan To Not Plan

100111 - planning to over planning

I am a planner. Always have been. For most things, my plans have plans and that helps me from worrying and freaking out. I predict all possible outcomes and then plan out what path I’ll take depending on the outcome. I’m a little neurotic about planning, just ask Charis.

However today I realized something.

I don’t plan long-term anymore.

When I got sick I totally lost all my planning power and since I’m so neurotic that was a huge struggle for me. But slowly over time I learned how to just let things happen because I couldn’t control anything or plan for outcomes. Today I was having a chat with my future brother-in-law and he was asking me all sorts of questions about where I see myself in 5, 10, 35 years. And I was honestly like, I don’t know…alive? He was asking me about jobs and where I’d like to be versus where I am, and what I pictured way down the line and I just didn’t have any normal kind of answer. I realized that being sick changed that about me.  I’m still totally neurotic about things that I can control and that are happening right now, but anything further than this year is an open book.

Here is what I know:

I want to be happy and healthy and have a job.

There you go. Future planned.  I know what kind of job I want (and have), but I don’t know if I’ll always have it or want to do it. I could get sick again and lose my job again, or lose the motor skills it takes to do that job.  He asked me if I planned on staying in my house for the forseeable future and I just thought…I hope so. I could lose my house, which I love.  He asked me if I was 100% sure I don’t want a family. I learned the hard way that you can never be 100% sure about anything. I don’t plan for kids, I don’t particularly want them but life changes. People change.

It dawned on me that most people have some kind of plan for their extended future. Granted many people out there are just happily floating through life, but the average joe has a plan for the next 10 or 15 years that includes more than be alive and make money.

Is this a chronic illness thing? Or is this a weird Jackie thing? Sometimes I feel like a lost 22 yr old, and other times I just feel like a calm collected adult that has learned to roll with the punches.

I think some of this stems from the generational changes from my parents to me. In my parents generation, you got a job, got married, had babies. You stayed in that house until you could afford a bigger better one, and you stayed at your job for as long as possible because there was a loyalty to your employer and it was rewarded. People didn’t switch jobs the way they do now. Picking a career was “final” and now its more like “what I feel like doing for the next 3 years”. My house is small and old but I love it. One day I’ll make enough money to move out of it, but I don’t think I will. And well, you all know how I feel about babies. “Settling down” isn’t really on my radar because it’s not like I’m particularly wild anyway. Actually last Friday night was full of insanity as I sat alone on my couch watching documentaries and crocheting. True Story.

Perhaps its just that I’m not worried about my future, because I’ve learned its exhausting worrying about the unknown. Or perhaps I’m just up for the adventure that accompanies a life unplanned. I don’t know and I’m ok with not knowing.

The CCFA Ad Campaign: Ain't No Party Like A Butt Hurt Party

Adco-popupAs usual, I’m about 3 weeks late to this party. I tend to avoid controversy while its happening, and then right when you think its over and everyone has forgotten…BAM. Here I am all, “I have an opinion and I’m sure its going to piss you off”. You all know what I’m talking about, right? The CCFA ad campaign.

I’m not going to be delicate with this one.

I don’t understand what everyone is all butt hurt about. Period. Its as simple as that. Don’t we have anything better to do than bitch about the first ever IBD awareness campaign? This all goes back to my theory and post about Invisible Awareness week. This is marketing….real marketing. Perhaps its just because I am a marketing professional but I understand this campaign. I’ve seen many people say that this trivializes IBD. People asking “Why aren’t they showing what its REALLY like to have IBD?”

Well…here’s why:  Its scary.

If you want any kind of response from the masses you can’t scare them. Think about other large disease awareness campaigns, like Cancer and AIDS. Do they show you people literally dying in hospital beds? No. Why? Because its fucking scary. Commercials for St. Judes, show kids with cancer…in the hospital but happy and smiling. Laughing and hugging cuddly teddy bears. If they showed kids post their chemo treatments, when they are sick and puking their guts out do you think people would be receptive? No.

Do you think the families of those children are upset that the “real” side of cancer isn’t being shown? Hell no. They are happy to get donations to St. Jude to help them care for their children. Lets talk about those commercials that ask you to donate your money to the starving, sick kids in Africa or wherever. They give you a sob story about children that can’t afford food or clothes, and who have no parents or education. They show you sad, adorable children. Do they show you the reality? Children emaciated and literally dying in the streets? Do they show violence over limited food supplies? No. Why? Its scary.

The point of the campaign from the CCFA was to raise awareness. Every ad had the letters “IBD” on it and if nothing else its getting that term to the masses. And quite frankly, everyone pissing and moaning about it, just raised more awareness for IBD because your blog posts, and reposts of those photos just make the terms show up more in Google. Perhaps behind the scenes, they were hoping this campaign would be controversial. Controversy raises conversation, and conversation raises awareness.

Think about this campaign as a first step. It is step one to telling the world about IBD and telling our stories. You can’t scare the world or else they won’t listen, won’t donate, and won’t give a crap. I asked a few people I know who don’t have IBD what they thought about the ads, because everyone keeps saying “People will think that this disease revolves around the bathroom” (News flash: It does). Well the first person I asked, said, and I quote,” I don’t get it, so those people have IBD?”

I think we’re all a little sensitive to the whole “being tied to the toilet” thing, and as a result we think that everyone else must think that IBD is a toilet disease. That’s why I tell my story and why you should too. Talk about it…tell people what its like. Why does it seem like this is one of those “I can make fun of my sister but you can’t” things? In the IBD community we make butt/toilet jokes all the time. We do it because its funny, and because its a coping mechanism. I learned to laugh at this a long time ago…but here’s the thing. The ads don’t make me laugh. They aren’t funny. No one is making fun of us or trivializing anything. Why can we talk about our realities (being stuck in a stall) but no one else can? And if you say because people will just think its the same as IBS then I’ll drop kick you in the face because I have NO Idea how anyone can deduce that from these ads. “IBD” is written all over them, and the info on the bottom gives more info about IBD. I have no clue where the hell IBS comes into this, and I think its just another reason for people to complain about things they can’t control. Was every IBDer consulted on these ads? Nope. Should they have been? Nope. Why? Because you can’t please everyone.

Do you really think that a full account of what IBD is like can be depicted in an 8×10 printed ad? If so, make one. Hell, I’ll fund it and shop it out to ad agencies if you think you can accomplish the following:

  •  A non-threatening or scary account of life with IBD
  • Information/stats/facts about IBD and what it can really do to your body
  • Images depicting IBD in a non-offensive manner and in a way that won’t embarass patients or viewers of the ad
  • Resources for those who have IBD
  • Individual stories about how it affects people differently
  • Information about how IBD can affect your mental state in addition to your physical state
  • A list of all other ways IBD can affect your body
  • Information about PICC lines, TPN, NG tubes, surgery, ostomies, and JP drains
  • A list of all the side effects of the medication

 Gee that sounds like an awful lot, right? This is a list that I complied from those who are complaining about these ads. I’m telling you right now, its impossible. You cannot fit all of that into a single marketing campaign. Since you can’t, does that mean we shouldn’t market IBD at all?

With all due respect…fuck no. I want people to know about my disease. I want them to know its name. I want them to know that it DOES involve a bathroom so when students in a classroom bolt out the door, their teachers don’t punish them. I want people to know that IBD can alter a life. To me…that is a good starting point and these campaign do exactly that.

The NEXT ad campaign perhaps can give more information. Yes…I said the NEXT one because I’m hoping this is the beginning of many campaigns, campaigns that will make IBD a household name and one that will no longer keep us in hiding. So that we can Escape The Stall…whatever your stall may be.

I think that the CCFA took a risk on this campaign and I think it was worth it, and if you don’t like….fund your own damn campaign or find someone to do it pro-bono. Go find your own celebrity with IBD and have them jump on board to be your spokesperson because that is what awareness takes unfortunately.  You have to make your disease sexy. Right now IBD is not a designer disease…but with this campaign it can be. That sounds shitty, right? Well that’s marketing people.

I know many people feel like this campaign depicts our disease in a negative light. Whelp….get over yourself. Period. This campaign is not about you and its not about me. Why? Because it affects us all differently, so one blanket campaign is not going to tell your story or mine. Its a collective voice just telling the world that IBD exists and a lot of different kinds of people live with it.

I’m glad that they took a risk, and put these ads out there. All that I see with these ads is a chance for conversation. A chance to talk about it, share your story, and raise awareness. Whether you like the ads or not, they have done exactly that.

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